I mentioned a few posts ago that I wanted to switch to a WordPress blog from this Blogger blog. Well, I've gone and done it. The new address is http://pressuresupport.wordpress.com/ and I do hope you'll come by and say hi. So change your bookmarks and your RSS feeds all the new stuff will be going up over there.
Leave me a comment when you get there, and thank you for supporting the Pressure.
Thursday, July 29, 2010
Sunday, July 25, 2010
Flotsam & Jetsam
I've got a folder of bookmarks that are just screaming to be linked to from this blog. I know, I know, I told them it would do them no good in their google ranking but they insisted.
This design for a holga inspired digital is beautiful. Simple clean and looks like it would be amazingly fun to use.
If you're not reading Letters of Note from time to time you must immediately remedy the situation. An ever growing collection of correspondence from all sorts of celebrities, historical figures and cultural icons. Some of my favorites include a reply to a fan from Steve Martin, Kurt Vonnegut's letter home describing his time as a POW, and Bill Watterson's letter announcing the end of Calvin & Hobbes. They update daily over there and its usually something interesting.
Artist Greg Peltz decided to do a series of victorian portraits with the characters of Star Wars. My favorite of course would be Boba.
It was a slow news day at the homestead today which is good. Got some much needed housework done and since we had a nurse for the afternoon (Karin's first break since Tuesday) so we spent it napping and relaxing and baking and going grocery shopping. It was nice. Liam is doing well even if he is a bit tired from yesterday's festivities. Tomorrow the plan is to take Liam somewhere special for being such a well behaved boy throughout all of this activity. Narrowed down the choices but we haven't yet decided so I'll just let you know tomorrow when I will probably have some pictures to share.
This design for a holga inspired digital is beautiful. Simple clean and looks like it would be amazingly fun to use.
If you're not reading Letters of Note from time to time you must immediately remedy the situation. An ever growing collection of correspondence from all sorts of celebrities, historical figures and cultural icons. Some of my favorites include a reply to a fan from Steve Martin, Kurt Vonnegut's letter home describing his time as a POW, and Bill Watterson's letter announcing the end of Calvin & Hobbes. They update daily over there and its usually something interesting.
Artist Greg Peltz decided to do a series of victorian portraits with the characters of Star Wars. My favorite of course would be Boba.
Not really a link but more of a recommendation, Karin and I watched and enjoyed Sunshine Cleaning tonight. Funny, very dark, but ultimately rewarding movie. Allan Arkin is of course wonderful playing the same irreverent grampa character he always does but it works for me.
It was a slow news day at the homestead today which is good. Got some much needed housework done and since we had a nurse for the afternoon (Karin's first break since Tuesday) so we spent it napping and relaxing and baking and going grocery shopping. It was nice. Liam is doing well even if he is a bit tired from yesterday's festivities. Tomorrow the plan is to take Liam somewhere special for being such a well behaved boy throughout all of this activity. Narrowed down the choices but we haven't yet decided so I'll just let you know tomorrow when I will probably have some pictures to share.
Saturday, July 24, 2010
Why watch Boston Med when we can live it?
"I just came from the huddle with the Doctors and the anesthesiologist and they think that he won't need to stay the night and you guys can go home when he wakes up."
[blink...blink. Karin and I exchange a knowing look and stare back at the pre-op nurse as she smiles politely]
"That's good news right? Do you have concerns about going home?"
Karin and I know better than to take the word of one nurse. When you have to answer the same questions from 15 different people you quickly realize that no one talks to each other in a hospital. Just because one person tells you something doesn't make it true. "No there aren't any concerns on our end." I told her "but I'll believe that when we are in the car." She awkwardly laughed and we continued to prepare Liam for the O.R.
Read the rest of our day at the hospital with some blurry pictures from our phones after the break...
Read the rest of our day at the hospital with some blurry pictures from our phones after the break...
Tuesday, July 20, 2010
Edward and Jacob are no match for him.
Sleeping is no mean art: for its sake one must stay awake all day. ~Friedrich Nietzsche
Nothing in this world can calm me like watching Liam sleep. It is a beautiful thing. Lately though, we've been seeing too much sleep in the day and not nearly enough in the night. The past two nights Liam has gone to sleep at 6:30 in the morning. He sleeps in the morning and again in the afternoon but refuses to sleep between midnight and 6am. Now before I get emails of tips and tricks let me assure you that we have tried it. What can I say? He likes the nightlife, he likes to boogie.
Part of it may be that he's teething. Incisors too. The top two have poked through those gums in the past two days. It occurs to me now that while his fangs are growing in he has been unable to sleep during the night. He does brood most of the time and nearly every lady he meets ends up falling for him. Thank god I haven't seen him sparkle yet. The world isn't ready for Team Liam.
Our new daytime nurse is great. A bit older than our other nurses she has that crazy, fun, aunt feel about her. She's loud and she's funny and she is wonderful with Liam. She tries as hard as she can to keep him awake for her shift so that he will turn this thing around but Liam refuses to co-operate. This morning as I rushed to get ready for work I saw her set Liam in his stander for his standing exercises with every loud blinky toy he owns on a tray in front of him. From barnyard noises to 'little brown jug' she had them all blaring their annoying best while holding his arms above his head with a mobility exercise. All the while Liam kept his eyes closed and snored. He can do that. He's been sleeping through physical therapy appointments for half his life.
The big Liam news last week though was that we came home on friday with our Passy Muir valve (also known as a speaking valve). Its a basic one way valve that prevents Liam from exhaling through his vent circuit. Air will now be forced out through the mouth and nose forcing him to relearn how to use his vocal chords and giving him a more robust swallow. This is a very big deal and as he tolerates its use more and more we will be able to feed him more solid foods. We have been working towards getting one for months and Liam has done so well with using it. We are so proud. Karin has been trying to capture some good audio of Liam flexing those pipes of his, I'll try and post here if she gets something good.
That's about all I've got for now. Its 1am and so Liam is just getting warmed up for playtime naturally and I've got some Bugs Bunny cartoons cued up on the netflix. That's all folks!
Oh! Except that I took this picture over the weekend and I like how it came out so I'd like you all to meet Gary the Garden Gnome who roams my side garden protecting my tomatoes and cucumbers from the neighborhood riff raff.
Sunday, July 18, 2010
Life in Quarantine - The Fully Sick Rapper
This guy Christiaan VanVuuren has been quarantined in an Australian hospital for 55 days due to a strain of TB. To pass the time he makes videos. Awesome stuff.
Karin and I went on our another date tonight. Second one in the last two years! Plan was a beer or two and then a movie. What actually happened was a few beers and then a few more beers; An awesome burger at the new fancy burger place Luxe ( they call themselves a Burger Bar, as if the combination of the two is new and exciting. A bit pretentious but a really good burger. I highly recommend the gorgonzola tator-tots as your side.); and a wonderful walk during a full waterfire. A wonderful evening and we both really needed it.
Saturday, July 17, 2010
First some gibber jabber about TV and then a medical situation.
I never watched Buffy. I've heard things and I suppose if I gave it a try I'd probably enjoy it, but for some reason I don't remember I didn't think it worth my time. I never really gave it much of a shot. I'd heard of Joss Whedon and how great a TV writer he was but never gave him much thought either. I might have to rethink my position on him and Buffy.
Faced with lots and lots of late night/early morning hours awake I pointed my Netflix streaming right at Firefly. To be honest I fell asleep during the first episode. Twice. But the next night I watched it straight through and got the second episode under my belt. Tonight I watched the third episode titled Bushwhacked. Awesome. I'm all of the sudden very much a fan of Mr. Whedon the third generation TV writer. (such a fan that I even went all the way to wikipedia to find out that little fact about him.) I was so oblivious to its initial TV run that even after however many years its been since it was cancelled I still have seen or read no spoilers. I'd heard about this quirky little sci-fi/western show that was trying hard to find steady audience but then it was gone. A blip on my pop-culture radar when the movie Serenity was released but no idea of its actual story. I did hear from a few friends that I'd like it though. They're right so far.
I might have to watch Buffy the Vampire Slayer. At this point I've got no reason not to. There are franchises that for some reason I haven;t been able to bring myself to get involved i.
*****We interrupt this blog post for a medical emergency******
I wish I was joking.
Funny story folks. As I was typing the little nonsense above, a nasty little mucous plug made its way into Liam's trach and plugged it up enough that suctioning it out with a catheter wasn't able to fix it. Emergency Trach Change Time -- Yay!! Nothing like having to spring into action with a steady hand and attention to the smallest sterile detail at 3:00am. Karin got it especially bad in that she was upstairs in a dead sleep. At least I was awake. Being woken up to that situation is not fun by any means. She's amazing by the way. She jumped into action with a word and within minutes our little blue guy was a little pink faced guy giving us dirty looks and wondering why his mean parents woke him up to jostle him around so much. My little warrior is pretty unfazed by these things; here we are less than twenty minutes later and he's sleeping soundly next to me.
So now I want to relax. I don't feel much like typing away about a silly TV show anymore. I am a new fan of Firefly but let's face it -- I'm a much bigger fan of Liam.
Faced with lots and lots of late night/early morning hours awake I pointed my Netflix streaming right at Firefly. To be honest I fell asleep during the first episode. Twice. But the next night I watched it straight through and got the second episode under my belt. Tonight I watched the third episode titled Bushwhacked. Awesome. I'm all of the sudden very much a fan of Mr. Whedon the third generation TV writer. (such a fan that I even went all the way to wikipedia to find out that little fact about him.) I was so oblivious to its initial TV run that even after however many years its been since it was cancelled I still have seen or read no spoilers. I'd heard about this quirky little sci-fi/western show that was trying hard to find steady audience but then it was gone. A blip on my pop-culture radar when the movie Serenity was released but no idea of its actual story. I did hear from a few friends that I'd like it though. They're right so far.
I might have to watch Buffy the Vampire Slayer. At this point I've got no reason not to. There are franchises that for some reason I haven;t been able to bring myself to get involved i.
*****We interrupt this blog post for a medical emergency******
I wish I was joking.
Funny story folks. As I was typing the little nonsense above, a nasty little mucous plug made its way into Liam's trach and plugged it up enough that suctioning it out with a catheter wasn't able to fix it. Emergency Trach Change Time -- Yay!! Nothing like having to spring into action with a steady hand and attention to the smallest sterile detail at 3:00am. Karin got it especially bad in that she was upstairs in a dead sleep. At least I was awake. Being woken up to that situation is not fun by any means. She's amazing by the way. She jumped into action with a word and within minutes our little blue guy was a little pink faced guy giving us dirty looks and wondering why his mean parents woke him up to jostle him around so much. My little warrior is pretty unfazed by these things; here we are less than twenty minutes later and he's sleeping soundly next to me.
So now I want to relax. I don't feel much like typing away about a silly TV show anymore. I am a new fan of Firefly but let's face it -- I'm a much bigger fan of Liam.
Sunday, July 11, 2010
New look, same excuses.
Yep, time for a new layout. I'm not married to it though so it may change again soon. Feels kind of silly to take the time tinkering around with fonts and colors when I should just buckle down and write a proper blog post but I'm tired and cranky waah waah waah.
I have to work tomorrow and so I will retire without even making an attempt at a post. Liam just fell asleep and Karin is catching a few hours of sleep upstairs. The old homestead is quiet aside from the rhythmic rumble of the ventilator and the steady hum of the air conditioner. If you close your eyes its almost as hypnotic as listening to ocean waves or a babbling brook. My house is always filled with white noise.
Night all.
I have to work tomorrow and so I will retire without even making an attempt at a post. Liam just fell asleep and Karin is catching a few hours of sleep upstairs. The old homestead is quiet aside from the rhythmic rumble of the ventilator and the steady hum of the air conditioner. If you close your eyes its almost as hypnotic as listening to ocean waves or a babbling brook. My house is always filled with white noise.
Night all.
Thursday, July 8, 2010
Bobby Mcferrin can control your voice too.
Truly fascinating mind control by Bobby Mcferrin.
World Science Festival 2009: Bobby McFerrin Demonstrates the Power of the Pentatonic Scale from World Science Festival on Vimeo.
Always hoping the next leap, would be the leap home.
Let's face it folks; in the battle over my late night hours sleep has been beating up on blogging for the last couple of months. While I don't see that changing much, I hope to be more productive here in the coming days. It will not be easy though. Add to the mix our recent return to Netflix and the fact that I can stream movies and TV to our Wii. How can I possibly be expected to blog when I can sit with Liam watching late night marathons of Doctor Who or even Quantum Leap? That's right folks, I said Quantum Leap. I'm watching some right now.
Liam is fantastic. He's getting bigger and bigger and achieving more and more with his PT, OT, and Speech Therapy. We've got a stander now to help him learn what it feels like to stand upright and has been doing very well tolerating it. He loves the fresh air and all three of us are enjoying his daily walks around the neighborhood.
Home nursing has gotten more complicated than it should be. While the actual care day to day has been better, the scheduling and bureaucracy of dealing with the nursing agency has gotten harder and harder. It is unfortunate that all of my family's plans are dependent on the scheduling prowess of a fairly rude administrative assistant. Even more unfortunate is that said assistant doesn't seem to understand that, even after repeatedly being told. After some angry yet professional and civil phone calls things have gotten better but I'm not ready to call it progress until they can sustain this level of care.
That said, we did manage to wrangle an evening of nursing help from someone we trust enough that Karin and I were able to go on a date! Dinner and a movie for the first time in close to two years. I'm pretty sure that the 4 and a half hours we were away was the longest that Liam has gone without one of us at his side since he left the NICU. It was great but we pushed the boundaries of Karin's tolerance for separation. We hadn't even placed our drink order when Karin informed me that we would not be ordering dessert. Toy Story 3 was fantastic of course, and yes, I cried at the end too.
That's all I've got for now. I've fended off sleep long enough and must surrender. Hope everyone had a great 4th and is enjoying their summer. Night all.
Liam is fantastic. He's getting bigger and bigger and achieving more and more with his PT, OT, and Speech Therapy. We've got a stander now to help him learn what it feels like to stand upright and has been doing very well tolerating it. He loves the fresh air and all three of us are enjoying his daily walks around the neighborhood.
Home nursing has gotten more complicated than it should be. While the actual care day to day has been better, the scheduling and bureaucracy of dealing with the nursing agency has gotten harder and harder. It is unfortunate that all of my family's plans are dependent on the scheduling prowess of a fairly rude administrative assistant. Even more unfortunate is that said assistant doesn't seem to understand that, even after repeatedly being told. After some angry yet professional and civil phone calls things have gotten better but I'm not ready to call it progress until they can sustain this level of care.
That said, we did manage to wrangle an evening of nursing help from someone we trust enough that Karin and I were able to go on a date! Dinner and a movie for the first time in close to two years. I'm pretty sure that the 4 and a half hours we were away was the longest that Liam has gone without one of us at his side since he left the NICU. It was great but we pushed the boundaries of Karin's tolerance for separation. We hadn't even placed our drink order when Karin informed me that we would not be ordering dessert. Toy Story 3 was fantastic of course, and yes, I cried at the end too.
That's all I've got for now. I've fended off sleep long enough and must surrender. Hope everyone had a great 4th and is enjoying their summer. Night all.
Saturday, June 19, 2010
I've seen it work on other blogs.
As it is now obvious that I can't be trusted to post here in a timely and consistent manner let's just see if I can't ram a few blog posts worth of stuff down your bloggy gullet.
Issue the First: The Celtics.
My reaction to the Boston Celtics' playoff run of which I watched nearly every game? . . . You're living in the past man, the Red Sox are only a game out of first place. Basketball season is sooo last night. (My post in which I respond to how wrong I was here to follow.)
If the side effects are my entertainment, count me in.
Now this one definitely deserves its own post and will get one soon.
I've been thinking a lot about the ipad lately and I think Liam needs one. The interface and its portability are perfect to be used in his occupational therapy and development. With Liam's poor vision, putting DVD's on our TV to entertain him is pointless. The ipad could be positioned close enough for him to really see helping both to entertain and teach him. But more than that I am interested to learn if there has been any research into therapeutic ways to teach developmentally disabled children with identifying shapes, numbers, letters and sounds in any new and interactive ways. We often use flash cards with Liam to track his vision and help him practice his small motor skills. I would expect that pressing and selecting objects and moving them around on-screen could be used in many more positions and placements for the child. Grasping and holding can tire Liam out quickly. Pointing, touching, and sliding may make for longer work and play sessions between rests while adding to and not replacing his arm and hand exercises.
I think it could also be used in aiding communication for children like Liam. Press this section of the screen to tell mommy your diaper needs changing press the green box to say 'I'm hungry'. Press the red section after a kiss to tell Mommy that you love her too! Think Stephen Hawking but simplified. Although he can make sounds vocally, Liam's diagnosis may prevent him from "speaking" to his mom and I. He can still communicate needs and wants. He can still appreciate cause and effect relationships and I'd like to see if the ipad interface could be customized in ways that flash cards and the big buttons and switches (which we currently use) can. As he grows older I think this could come in handy.
Does anyone (out of the 4 or 5 of you who read this blog) know of any research into this, or apps for the ipad that are designed for this? I plan on asking our occupational therapist and speech therapist (who handles all sorts of ways to communicate other than speech.) if they have seen anything of the sort.
This is not a veiled attempt at justifying the purchase of an ipad. As much as I would love to go and buy one, that is an expense far too great for our budget and I don't expect to have one for years. But I've been thinking about its educational potential for Liam's future and am curious to find out more. Karin and I have always held to the same mission of nearly all parents; to give Liam every opportunity and tool that we can to help him achieve his fullest potential. If the ipad figures into that I'd certainly like to know it.
I've had similar questions regarding the wii system but the remotes are far too heavy for Liam and he's still stuck on the easy level for Guitar Hero (gotta get the pinkie finger involved kid.)
Read, Read, Read
I started the year tearing through books. A clip of almost a book a week. I haven't read any fiction in a few months now and only recently figured out why. Ever have one of those errands that every night before you fall asleep you remember that you need to do but by morning its gone and another day goes by without it accomplished? Yeah, library books are like that for me. I think I am not reading because of my guilt about overdue library books. Tremendously overdue library books. I just forget to throw them in the car in the morning to make my way there, but every night I remember.
The worst part though isn't the impending fine as I intend to make full restitution. I fully support the Library and will love giving them a bit of money the worst part is that somewhere someone may be waiting to read Boneshaker by Cherie Priest. (read her blog here) and can't because I'm a big irresponsible jerk. The book is all kinds of awesome by the way which makes me feel even worse about the whole situation.
Speaking of Librarians....
Park the car over at Makeout Point.
Please support Denver band Makeout Point by checking out their website and hopefully buying their record at itunes. The drummer (whose super hero disguise happens to be that of a librarian) is my only true lifelong friend. Some family you get to choose and even if I didn't love Patrick like a brother I would tell you to check out Makeout Point because they do in fact, rock the house.
Moving Day?
Contemplating a move from blogger to WordPress but not sure it would be to any great benefit unless I get my butt in gear and actually, you know, write a blog. If you've got any thoughts either way send them along.
Issue the First: The Celtics.
My reaction to the Boston Celtics' playoff run of which I watched nearly every game? . . . You're living in the past man, the Red Sox are only a game out of first place. Basketball season is sooo last night. (My post in which I respond to how wrong I was here to follow.)
If the side effects are my entertainment, count me in.
Now this one definitely deserves its own post and will get one soon.
I've been thinking a lot about the ipad lately and I think Liam needs one. The interface and its portability are perfect to be used in his occupational therapy and development. With Liam's poor vision, putting DVD's on our TV to entertain him is pointless. The ipad could be positioned close enough for him to really see helping both to entertain and teach him. But more than that I am interested to learn if there has been any research into therapeutic ways to teach developmentally disabled children with identifying shapes, numbers, letters and sounds in any new and interactive ways. We often use flash cards with Liam to track his vision and help him practice his small motor skills. I would expect that pressing and selecting objects and moving them around on-screen could be used in many more positions and placements for the child. Grasping and holding can tire Liam out quickly. Pointing, touching, and sliding may make for longer work and play sessions between rests while adding to and not replacing his arm and hand exercises.
I think it could also be used in aiding communication for children like Liam. Press this section of the screen to tell mommy your diaper needs changing press the green box to say 'I'm hungry'. Press the red section after a kiss to tell Mommy that you love her too! Think Stephen Hawking but simplified. Although he can make sounds vocally, Liam's diagnosis may prevent him from "speaking" to his mom and I. He can still communicate needs and wants. He can still appreciate cause and effect relationships and I'd like to see if the ipad interface could be customized in ways that flash cards and the big buttons and switches (which we currently use) can. As he grows older I think this could come in handy.
Does anyone (out of the 4 or 5 of you who read this blog) know of any research into this, or apps for the ipad that are designed for this? I plan on asking our occupational therapist and speech therapist (who handles all sorts of ways to communicate other than speech.) if they have seen anything of the sort.
This is not a veiled attempt at justifying the purchase of an ipad. As much as I would love to go and buy one, that is an expense far too great for our budget and I don't expect to have one for years. But I've been thinking about its educational potential for Liam's future and am curious to find out more. Karin and I have always held to the same mission of nearly all parents; to give Liam every opportunity and tool that we can to help him achieve his fullest potential. If the ipad figures into that I'd certainly like to know it.
I've had similar questions regarding the wii system but the remotes are far too heavy for Liam and he's still stuck on the easy level for Guitar Hero (gotta get the pinkie finger involved kid.)
Read, Read, Read
I started the year tearing through books. A clip of almost a book a week. I haven't read any fiction in a few months now and only recently figured out why. Ever have one of those errands that every night before you fall asleep you remember that you need to do but by morning its gone and another day goes by without it accomplished? Yeah, library books are like that for me. I think I am not reading because of my guilt about overdue library books. Tremendously overdue library books. I just forget to throw them in the car in the morning to make my way there, but every night I remember.
The worst part though isn't the impending fine as I intend to make full restitution. I fully support the Library and will love giving them a bit of money the worst part is that somewhere someone may be waiting to read Boneshaker by Cherie Priest. (read her blog here) and can't because I'm a big irresponsible jerk. The book is all kinds of awesome by the way which makes me feel even worse about the whole situation.
Speaking of Librarians....
Park the car over at Makeout Point.
Please support Denver band Makeout Point by checking out their website and hopefully buying their record at itunes. The drummer (whose super hero disguise happens to be that of a librarian) is my only true lifelong friend. Some family you get to choose and even if I didn't love Patrick like a brother I would tell you to check out Makeout Point because they do in fact, rock the house.
Moving Day?
Contemplating a move from blogger to WordPress but not sure it would be to any great benefit unless I get my butt in gear and actually, you know, write a blog. If you've got any thoughts either way send them along.
Tuesday, June 15, 2010
Eating calories instead of burning them.
A day off from work today. All day yesterday Karin and I talked about leaving the house at the same time together today. A real treat since it hasn't happened in months, the plan was taking off to hit the gym. We slept late since we've grown pretty comfortable with our new day nurse (just in time for the agency to cut back her hours of course.) and got all gussied up in our gym clothes and headed out. Somewhere along the line our plan changed though. Somewhere between getting dressed in our gym gear and actually arriving at the gym the plan changed into going out for breakfast. A meal in a restaurant. A waitress taking our order and bringing food to us at our table?! I think we both forgot how much fun that could be.
Saturday, June 12, 2010
bad blogger.
I guess all it takes to get me to blog again is a truly terrible day. Some increased seizure activity and random fever spikes had us spending most of the day in the Dr.'s office and a trip to the hospital for an x-ray. The x-ray was complete overkill if you ask Karin and I but we completely understand the doctor's reasoning for ordering one and his need to check it off the list. We know our boy and we know his breathing better than anything. If he were having respiratory symptoms we would see it in his ventilator readings and pulse oxymeter. We shot home as soon as the films were taken knowing that there would be no need to admit Liam. The doctor called three hours later to tell us what we already knew.
The kid caught a bug. He got sick. It happens. With all of the extra information we have about Liam's body it is difficult for us to accept that we can't point to a specific cause. Guess what? Kids get sick. Happens everyday, but when that kid is on a ventilator we have to worry about x-rays and white blood cell counts. Yippee.
He's doing much better now after an afternoon of sleep anyway. We've been taking his temperature every few hours to watch for another spike but things have been just fine since we returned home. He's definitely uncomfortable and possibly in pain. I can tell because his heart rate is a bit elevated but it's nothing we can't deal with at home. The pain and fevers can both raise the likelihood of seizures though so we watch, and we hope he gets the rest he needs to fight off whatever bug he's picked up.
It's a shame I waited so long to blog. We have enjoyed a bunch of awesome milestones and events including Liam's first backyard cookout here at the house to celebrate a special mother's day and the anniversary of his initial trip home from the Nicu. We had a great time at a special private event at the local zoo for kids who have spent significant time in the Children's Hospital; and have made large steps forward in his therapy and development. All of these stories would have made wonderful blog posts (and maybe still will someday) but I get tired at night. Having an 18 month old at home is hard, ask any parent, and sometimes I have to decide between sleep and blogging. I used to think I could do both, I'm getting wiser in my old age.
G'night all.
The kid caught a bug. He got sick. It happens. With all of the extra information we have about Liam's body it is difficult for us to accept that we can't point to a specific cause. Guess what? Kids get sick. Happens everyday, but when that kid is on a ventilator we have to worry about x-rays and white blood cell counts. Yippee.
He's doing much better now after an afternoon of sleep anyway. We've been taking his temperature every few hours to watch for another spike but things have been just fine since we returned home. He's definitely uncomfortable and possibly in pain. I can tell because his heart rate is a bit elevated but it's nothing we can't deal with at home. The pain and fevers can both raise the likelihood of seizures though so we watch, and we hope he gets the rest he needs to fight off whatever bug he's picked up.
It's a shame I waited so long to blog. We have enjoyed a bunch of awesome milestones and events including Liam's first backyard cookout here at the house to celebrate a special mother's day and the anniversary of his initial trip home from the Nicu. We had a great time at a special private event at the local zoo for kids who have spent significant time in the Children's Hospital; and have made large steps forward in his therapy and development. All of these stories would have made wonderful blog posts (and maybe still will someday) but I get tired at night. Having an 18 month old at home is hard, ask any parent, and sometimes I have to decide between sleep and blogging. I used to think I could do both, I'm getting wiser in my old age.
Tuesday, May 25, 2010
Saying hi to swingsets.
Karin is asleep upstairs, Liam is asleep in his crib next to me and I am going to post quickly before trying to get some sleep myself.
Haven't put any photos up in a while. Let's fix that shall we,
Want to see the Greatest Picture Ever? I thought so...
That's the greeting I got from my boy when I met him and his mother at the Dr.'s office on friday afternoon. Most of his Doc's have offices within a couple hundred yards of my office and so Karin packed him up and brought him all by herself and I met them once they got there. Karin snapped this with her phone when I sat down with Liam in the waiting room and said hi. Look at that grin. The picture, of course, has been on my office computer screen ever since.
Over the weekend we also got a chance to go to a special park that featured swings and playground equipment for kids of all ages and disabilities. The event was put on for families of the VIP program (Ventilator Integration Program) and was a chance for us to hang out and meet families going through very similar situations. We were able to finally meet in person a family that we have only known through facebook and text messages who have very similar circumstances. They're good people, and I'm happy to have friends who understand what we're going through right now.
Liam got to ride on a swing for the first time! It was a neat swing that held his whole stroller on a platform chained to the swingset. His mother and I took turns pushing while the other snapped photos. He seemed to enjoy the breeze while swinging through the air. Awesome stuff indeed.

I'm tired now and need to get some sleep so I'll put one more up and bid you all a good night. Sleep tight.
Haven't put any photos up in a while. Let's fix that shall we,
Want to see the Greatest Picture Ever? I thought so...
That's the greeting I got from my boy when I met him and his mother at the Dr.'s office on friday afternoon. Most of his Doc's have offices within a couple hundred yards of my office and so Karin packed him up and brought him all by herself and I met them once they got there. Karin snapped this with her phone when I sat down with Liam in the waiting room and said hi. Look at that grin. The picture, of course, has been on my office computer screen ever since.Over the weekend we also got a chance to go to a special park that featured swings and playground equipment for kids of all ages and disabilities. The event was put on for families of the VIP program (Ventilator Integration Program) and was a chance for us to hang out and meet families going through very similar situations. We were able to finally meet in person a family that we have only known through facebook and text messages who have very similar circumstances. They're good people, and I'm happy to have friends who understand what we're going through right now.
Liam got to ride on a swing for the first time! It was a neat swing that held his whole stroller on a platform chained to the swingset. His mother and I took turns pushing while the other snapped photos. He seemed to enjoy the breeze while swinging through the air. Awesome stuff indeed.
I'm tired now and need to get some sleep so I'll put one more up and bid you all a good night. Sleep tight.
Thursday, May 20, 2010
Bittersweet
An employee surprised me the other day by playing this song in the kitchen the other day. I'm sure I haven't heard it in years and I forgot how much I love this tune. Its been running through my head ever since. Because of that I put it here for you now. Enjoy.
Sunday, May 16, 2010
The Back 40.
Last year I planted my first garden. I thought that was pretty neat. I had big plans on eating smarter again after spending 5 months eating almost nothing but hospital cafeteria food. So in the middle of June with visions of august meals, I planted three types of tomatoes, green beans, eggplant, cucumbers and summer squash. I didn't know at the time that I would go on to spend the next 4 months eating nothing but a different hospital cafeteria's food. Bummer.
All of the plants grew surprisingly well given my level of neglect. Had I watered them during the dryer weeks of the season we would have had fresh ingredients for a majority of the summer and late into the fall. Every plant grew large and fruitful but was never harvested. Alas, I let a lot of crops die on the vine but all of that dead fruit helped to fertilize the soil in that area. This year I am eagerly anticipating the growing season. I've done more yard work this spring already than I did last year and hope to continue that all year. I can't wait to get the garden really going again. Next weekend the plan is to move my compost pile and turn the garden's soil. Hopefully I'll have enough of my own compost to hit all the areas but I'll probably need to hit Benny's for some fertilizer.
My father has a bunch of tomato plants for me that he grew from seed in the greenhouse. He also has some spinach plants and I'll steal a few of those as well since spinach currently is the base of my lunch every single day at work. I'll definitely go with green beans again since I love eating them and there were tons of them last year. But after that I am not sure what else I'll be growing. I'm open to suggestions. I also have to find a place for my two gooseberry bushes. When I was a kid I used to make myself sick eating gooseberries in my nan's yard and now I have a few bushes of my own from her yard. They're still in buckets as we speak though and I'm not sure where I want them yet. Already got fruit on them though so that's cool. Gooseberries were the crazy special ingredient on a recent episode on Chopped - also cool.
In the year before Karin was pregnant with Liam, she and I had each lost 50 pounds by exercising daily and eating all the right things (fresh, fresh, fresh and unprocessed) while staying away from all the wrong things (fast, processed foods). Then we had a child; and stress dictated diet more than anything else. We're just now getting back on track. We both have been getting to the gym 5 days a week and the snacks in the house right now are limited to fresh fruit and greek yogurt. While last year I was glad I planted even if I didn't end up harvesting, this year I am excited to create meals with my own produce. Right from my own garden.
All of the plants grew surprisingly well given my level of neglect. Had I watered them during the dryer weeks of the season we would have had fresh ingredients for a majority of the summer and late into the fall. Every plant grew large and fruitful but was never harvested. Alas, I let a lot of crops die on the vine but all of that dead fruit helped to fertilize the soil in that area. This year I am eagerly anticipating the growing season. I've done more yard work this spring already than I did last year and hope to continue that all year. I can't wait to get the garden really going again. Next weekend the plan is to move my compost pile and turn the garden's soil. Hopefully I'll have enough of my own compost to hit all the areas but I'll probably need to hit Benny's for some fertilizer.
My father has a bunch of tomato plants for me that he grew from seed in the greenhouse. He also has some spinach plants and I'll steal a few of those as well since spinach currently is the base of my lunch every single day at work. I'll definitely go with green beans again since I love eating them and there were tons of them last year. But after that I am not sure what else I'll be growing. I'm open to suggestions. I also have to find a place for my two gooseberry bushes. When I was a kid I used to make myself sick eating gooseberries in my nan's yard and now I have a few bushes of my own from her yard. They're still in buckets as we speak though and I'm not sure where I want them yet. Already got fruit on them though so that's cool. Gooseberries were the crazy special ingredient on a recent episode on Chopped - also cool.
In the year before Karin was pregnant with Liam, she and I had each lost 50 pounds by exercising daily and eating all the right things (fresh, fresh, fresh and unprocessed) while staying away from all the wrong things (fast, processed foods). Then we had a child; and stress dictated diet more than anything else. We're just now getting back on track. We both have been getting to the gym 5 days a week and the snacks in the house right now are limited to fresh fruit and greek yogurt. While last year I was glad I planted even if I didn't end up harvesting, this year I am excited to create meals with my own produce. Right from my own garden.
Monday, May 10, 2010
When you believe in things that you don't understand,Then you suffer.
Growing up I don't ever remember being a superstitious person. I guess my only superstitions have come from times of great stress.
I won't ever shave or cut my hair when Liam is in the hospital. If the itchiness gets really bad I will shave just where my shirt collar rubs my neck but no shaving of my face. You should have seen me the day we left the Nicu after 153 days. Grizzly Adams had nothing on me.
I only cut my hospital bracelets on discharge day. When you're seen in the E.R. they give you a bracelet and then you get another when you are admitted. Once admitted the ER bracelet can be removed but I never do. On long hospital stays bracelets can get kind of gross. Nicu bracelets used to have folded pieces of paper under clear plastic. The paper would start to stink after it got wet from hand washing. Nurses would constantly be asking to give me a new one but I always refused. Sure, bracelets can wear out and snap off, its inevitable on the long stays, but I only cut off hospital bands on discharge day.
I guess I only mention this now because last night I got to cut off a few bands and this morning I finally got to shave. Liam spent most of the last week in the Intensive Care Unit at Hasbro Children's Hospital. He's home now. It was a long, trying week and I am glad its over.
Mother's Day this year was supposed to be a very big deal because it was to be the first Mother's Day that Karin didn't spend in a hospital but unfortunately that didn't end up being the case. Liam's gift to his Mom though was getting well enough that she got a few hours at home with him in the evening of Mother's Day. The Kid always gets us the best gifts.
He needed to go into the hospital because of some GI problems. He's fine now and I'll spare you the boring details and medical talk.
I will tell you though that the universe works in very mysterious ways. Almost immediately after being admitted to The Unit (its what patients and employees call the ICU) we were approached by a few nurses and the unit's social worker and asked if we wouldn't mind talking with a few different families whose children either just got trachs or were about to get trachs. When Karin and I grappled with the difficult decision to put in Liam's trach it was conversations with another family who had been through it that got us through such a difficult time. Liam must have known that there were families in the hospital that needed our help. In only a few days we became very close with a few families. I am sure that we will see each other again as we already have plans to get together outside of the hospital. Being through what we have been through has given our families a common bond that few people in this world can relate to. You can never truly understand what its like unless you've lived it and so talking with anyone else in a similar situation is a blessing.
I do believe that we were sent to the hospital at this particular time to help these families but I'm not sure that the families know how much they helped us. Talking with them gave us a purpose while in the hospital. A mission. A distraction. If nothing else it made the time go by quicker and before we knew it, it was time to go home. Thank you Morgan's family and Becky's family. We will always remember how our families met. Don't ever forget that as much as it may seem like it sometimes, you are not alone.
It will take a few days for life to get back to normal. All three of us are exhausted and the house is a complete mess. Liam is sleeping now and Karin is upstairs doing the same. As soon as I publish this post I will stretch out on the couch next to Liam's crib and try to be the third. It shouldn't be a problem I'm not superstitious about sleep.
I won't ever shave or cut my hair when Liam is in the hospital. If the itchiness gets really bad I will shave just where my shirt collar rubs my neck but no shaving of my face. You should have seen me the day we left the Nicu after 153 days. Grizzly Adams had nothing on me.
I only cut my hospital bracelets on discharge day. When you're seen in the E.R. they give you a bracelet and then you get another when you are admitted. Once admitted the ER bracelet can be removed but I never do. On long hospital stays bracelets can get kind of gross. Nicu bracelets used to have folded pieces of paper under clear plastic. The paper would start to stink after it got wet from hand washing. Nurses would constantly be asking to give me a new one but I always refused. Sure, bracelets can wear out and snap off, its inevitable on the long stays, but I only cut off hospital bands on discharge day.
I guess I only mention this now because last night I got to cut off a few bands and this morning I finally got to shave. Liam spent most of the last week in the Intensive Care Unit at Hasbro Children's Hospital. He's home now. It was a long, trying week and I am glad its over.
Mother's Day this year was supposed to be a very big deal because it was to be the first Mother's Day that Karin didn't spend in a hospital but unfortunately that didn't end up being the case. Liam's gift to his Mom though was getting well enough that she got a few hours at home with him in the evening of Mother's Day. The Kid always gets us the best gifts.
He needed to go into the hospital because of some GI problems. He's fine now and I'll spare you the boring details and medical talk.
I will tell you though that the universe works in very mysterious ways. Almost immediately after being admitted to The Unit (its what patients and employees call the ICU) we were approached by a few nurses and the unit's social worker and asked if we wouldn't mind talking with a few different families whose children either just got trachs or were about to get trachs. When Karin and I grappled with the difficult decision to put in Liam's trach it was conversations with another family who had been through it that got us through such a difficult time. Liam must have known that there were families in the hospital that needed our help. In only a few days we became very close with a few families. I am sure that we will see each other again as we already have plans to get together outside of the hospital. Being through what we have been through has given our families a common bond that few people in this world can relate to. You can never truly understand what its like unless you've lived it and so talking with anyone else in a similar situation is a blessing.
I do believe that we were sent to the hospital at this particular time to help these families but I'm not sure that the families know how much they helped us. Talking with them gave us a purpose while in the hospital. A mission. A distraction. If nothing else it made the time go by quicker and before we knew it, it was time to go home. Thank you Morgan's family and Becky's family. We will always remember how our families met. Don't ever forget that as much as it may seem like it sometimes, you are not alone.
It will take a few days for life to get back to normal. All three of us are exhausted and the house is a complete mess. Liam is sleeping now and Karin is upstairs doing the same. As soon as I publish this post I will stretch out on the couch next to Liam's crib and try to be the third. It shouldn't be a problem I'm not superstitious about sleep.
Tuesday, April 27, 2010
The March
The March for Babies was yesterday morning. It was cold and rainy but still fun. Liam was a trooper and made it through the whole walk. By the end he was by far the driest and warmest of us all.
I wanted to spend the walk thinking about what I would write here and taking lots of pictures but instead I was only focused on trying to keep Liam warm and dry. A distant second was trying to keep myself warm and dry.
Team Liam was the most successful of all the "family" teams. We raised over $5000. and I would like to mention that the top three fundraisers on the team were my Aunt Kelly, Karin's Mom and my Mom who each raised over a thousand dollars. Amazing work and I am so proud of them all.
I'm sorry folks but I'm exhausted. I wanted to have a great long post about the walk and what it means to us but I don't have the energy tonight. I just wanted to post a few pics and make sure to mention how proud I am of our team. I've done that and now its time to get some sleep.
Night all.
Sunday, April 25, 2010
Pre-Walk Walk
March of Dimes sponsored March for Babies day really is like a holiday for most families touched by premature birth. We have been waiting to take Liam on this walk for a year. Last year we finished walking and went straight back to the NICU to tell Liam all about it. This year we get to show him.
In the morning we prepared the house for the walk and in the afternoon we took a practice lap. We haven't had many chances to put the new stroller through its paces and so we took advantage of the nice weather and headed out. Good thing too because we did find a few things we can do differently tomorrow to make things easier.
Afterward we spent a good while just hanging out in the yard and waiting for Liam's Aunt Kathy and cousin Aiden to come over and for his Grammy and Opa to arrive from New Jersey. I got to take a bunch of photos before and after our stroll.
It makes me a little sad to see how big he looks in this photo. My big boy is growing up way too fast.

Kid knows how to wear a hat though.

Dad! Don't make me laugh so hard!
(or yawn, it could be a yawn)
I'm going with laugh though.

My bubbles.

He seemed to really love hanging out outside for a change.

It may be so 2009, but no one rocks the faux hawk quite as cool as Liam. This shot is Mom's handiwork.

Liam tries to play it cool even though he's psyched about the awesome paper plate maraca that his cousin made for him today at the zoo.

Coooool.
We finished the day with an incredibly delicious meal prepared by Karin's mom and settled in early in anticipation of tomorrow's festivities. Thank you to all who helped out here today and I'm excited to see everyone involved with the walk tomorrow.
Go Team Liam!
In the morning we prepared the house for the walk and in the afternoon we took a practice lap. We haven't had many chances to put the new stroller through its paces and so we took advantage of the nice weather and headed out. Good thing too because we did find a few things we can do differently tomorrow to make things easier.
Afterward we spent a good while just hanging out in the yard and waiting for Liam's Aunt Kathy and cousin Aiden to come over and for his Grammy and Opa to arrive from New Jersey. I got to take a bunch of photos before and after our stroll.
It makes me a little sad to see how big he looks in this photo. My big boy is growing up way too fast.
Kid knows how to wear a hat though.
Dad! Don't make me laugh so hard!
(or yawn, it could be a yawn)
I'm going with laugh though.
My bubbles.
He seemed to really love hanging out outside for a change.
It may be so 2009, but no one rocks the faux hawk quite as cool as Liam. This shot is Mom's handiwork.
Liam tries to play it cool even though he's psyched about the awesome paper plate maraca that his cousin made for him today at the zoo.
Coooool.
We finished the day with an incredibly delicious meal prepared by Karin's mom and settled in early in anticipation of tomorrow's festivities. Thank you to all who helped out here today and I'm excited to see everyone involved with the walk tomorrow.
Go Team Liam!
Saturday, April 24, 2010
Forward March
Lots to do, lots to do.
March of Dimes walk is tomorrow and Team Liam is roaring to go. The cookout here at the house after the walk has the whole family running around like crazy. Except for Liam. He's busy napping.
Lawn has been mowed, floors have been swept and mopped. Baked goods are in the oven and all seating areas are cleared for visitors who are coming in from all over.
All that's left to do now is show you a video of Travis Pastrana doing a high speed and altitude back flip on a big wheel. A pink big wheel. Oh c'mon, you know you want to see it.
March of Dimes walk is tomorrow and Team Liam is roaring to go. The cookout here at the house after the walk has the whole family running around like crazy. Except for Liam. He's busy napping.
Lawn has been mowed, floors have been swept and mopped. Baked goods are in the oven and all seating areas are cleared for visitors who are coming in from all over.
All that's left to do now is show you a video of Travis Pastrana doing a high speed and altitude back flip on a big wheel. A pink big wheel. Oh c'mon, you know you want to see it.
Thursday, April 22, 2010
Play Ball II
Liam slept well last night which has left me chipper and energetic this morning. Regular readers of the Pressure know that I usually only post in the wee small hours of the morning; today I'm trying to squeeze out a post before work.
Red Sox on a streak.
The Sox have actually put together a couple of wins in a row. No small feat for a team that seems allergic to run scoring. I know its early and these things have a way of working themselves out over the course of a long season but pitching and defense are not the strategy you need in the american league east. Other divisions, you may be able to get yourself enough 3-2 wins but when you have to face the Yanks and the Rays 18 times a piece you need to be able to score. I, and many of the long time Red Sox fans I work with, have already allowed ourselves to fall back into old ways. Pre 04 days. There's always next year. I'm surprised at how easy that attitude came back. Its an attitude that long time Red Sox fans feel comfortable with. We've got our swagger back. Helps to weed out the fair weather fans (pink hats) anyway.
One employee of mine though is upset, very upset. Every day he comes to work angry at how poorly the Red Sox have looked and I will say it does remind me of me back in the day but his anger is different. It took me a while to figure it out but since he was only 15 years old when the Red Sox won the world series in 04. He expects to win. He expects the playoffs every year. He doesn't remember the early 90's. He doesn't remember '86. He doesn't yet know what it feels like to have this team really break your heart. Over and over again. He came to work after the sox's 5th straight loss and stood in my office and shouted "Now I know what its like to be a Kansas City Royals Fan!" I turned to face him and calmly explained. "No, now you know how it feels to be a Red Sox fan young-in." Poor kid. I was only 9 when they first broke my heart. I think its easier when it happens that young. I got used to it.
Let's be clear, I hope I'm wrong. I hope they turn it around and we make the playoffs. I will be pulling for them to do so every day. I will still watch on the edge of my seat and will still yell at my TV during games but I'm just mentally prepared for it not to happen. For them to tease me into thinking its possible right before the yearly June swoon. Our division is just too tough and I don't think that good pitching and adequate defense is going to be enough. Unless they make a big move before the deadline (a la trading Nomar in 04) it's going to be a long season.
But remember the mantra of all long time Red Sox fans, there's always next year!
Red Sox on a streak.
The Sox have actually put together a couple of wins in a row. No small feat for a team that seems allergic to run scoring. I know its early and these things have a way of working themselves out over the course of a long season but pitching and defense are not the strategy you need in the american league east. Other divisions, you may be able to get yourself enough 3-2 wins but when you have to face the Yanks and the Rays 18 times a piece you need to be able to score. I, and many of the long time Red Sox fans I work with, have already allowed ourselves to fall back into old ways. Pre 04 days. There's always next year. I'm surprised at how easy that attitude came back. Its an attitude that long time Red Sox fans feel comfortable with. We've got our swagger back. Helps to weed out the fair weather fans (pink hats) anyway.
One employee of mine though is upset, very upset. Every day he comes to work angry at how poorly the Red Sox have looked and I will say it does remind me of me back in the day but his anger is different. It took me a while to figure it out but since he was only 15 years old when the Red Sox won the world series in 04. He expects to win. He expects the playoffs every year. He doesn't remember the early 90's. He doesn't remember '86. He doesn't yet know what it feels like to have this team really break your heart. Over and over again. He came to work after the sox's 5th straight loss and stood in my office and shouted "Now I know what its like to be a Kansas City Royals Fan!" I turned to face him and calmly explained. "No, now you know how it feels to be a Red Sox fan young-in." Poor kid. I was only 9 when they first broke my heart. I think its easier when it happens that young. I got used to it.
Let's be clear, I hope I'm wrong. I hope they turn it around and we make the playoffs. I will be pulling for them to do so every day. I will still watch on the edge of my seat and will still yell at my TV during games but I'm just mentally prepared for it not to happen. For them to tease me into thinking its possible right before the yearly June swoon. Our division is just too tough and I don't think that good pitching and adequate defense is going to be enough. Unless they make a big move before the deadline (a la trading Nomar in 04) it's going to be a long season.
But remember the mantra of all long time Red Sox fans, there's always next year!
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